vent

  1. Kristina1

    frightened by another post

    The post in general forum about eye lid surgery frightened me. I was under the impression that all or vast majority of pals can use eye gaze communication indefinitely despite body becoming fully paralyzed. At this stage in my disease my feelings are that I want to continue to live for as long...
  2. KimT

    Pain

    In February I noticed my right knee started to hurt after exercising in pool. Just sitting on a noodle and peddling it like a bicycle (same as I had been doing for last year). I also continued walking on a treadmill for 10 minutes (1/2 mile) each morning, sometimes on a slight incline to get...
  3. Clearwater AL

    New cars...

    New cars… (For those bored... something to read.) :-) Fifteen, twenty and 30 years ago when I bought a newer or a brand new car after I signed the paper work and got the keys… I’d get in the car I just bought, happy with my purchase. I’d reach under the front of the seat and adjust the seat...
  4. C

    Please share your experience at ALS clinic - very frustrated!

    Hi all! We’ve only been to our ALS clinic once to meet neurologist and clinic nurse which was two weeks ago. During the visit we inquired about a couple trials my Dad may be interested in as well as treatments Riluzole and Edaravone. The Neurologist and Nurse said they could give us no advise...
  5. bkite

    Have vent, will travel II

    About 3 years ago, the ALS Clinic social worker counseled to get "green time. Still getting my dose of green! :razz: Love the eastern Cascades!
  6. N

    Hospice Care on a Vent

    Hospice Care on a Vent or Home Health, not Pvt Duty Hi All, Tossing this out there to see if anyone, in any state was able to find Hospice Care if your PALS was vented. Or Home Health, not Pvt Duty. I currently can’t even get Home Health in for wellness checks. If you were able to get that...
  7. L

    VA coverage for 24 hour care?

    Hi, everyone. This is such a wonderful community you all have built. I have learned so much already and am so grateful for this resource. My friend has very recently been diagnosed with ALS, bulbar onset. Diagnosis was only about 3 weeks ago, but things have been progressing rapidly as his...
  8. NothingButLove

    My universe is most likely coming to an end...

    I really, really wanted to be an active member on this forum. Around September of last year, my wife has wanted me by her side all the time. The depression, stress and physical fatigue brings me down. The lack of sleep just destroys me. I just couldn't find the time... I've seen posts saying...
  9. B

    Breathing

    I have a question concerning breathing...when you decide not to vent what happens next. What do they do to keep you from grasping for breath. How long can you go just using the bipap.
  10. S

    End Stages

    Hello, My mom is in the end stages of ALS. We had in-home hospice for a week when we decided together to go to the in-patient facility so she could be more comfortable as the meds at home were not doing enough. We’ve been here almost a week now and she had been more comfortable but now I am...
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